We must develop specialist clinical teams, knowledgeable, and experienced in the long term care of the sufferers of Post-Polio Syndrome, using existing infrastructure throughout the UK and, eventually, worldwide.
Throughout the UK there are approximately 150,000 survivors of Polio, now suffering from a totally unexpected and very debilitating motor neuron degenerative condition, known as Post-Polo Sequelae, or Post-Polio Syndrome. Regrettably there are very few medical professionals who have even a slight understanding of the long term care for us. In fact many GPs know virtually nothing about Polio, and even less about PPS, so our work is extremely important and urgent. Many patients are not receiving any support, and some are actually receiving the wrong advise which is creating even more problems for us.
I need someone experienced in the discovery, and therefore, the development of small professional teams to work with specific targets and within very specific areas of work. I know, for example, that throughout the UK there are very skilled Physiotherapists who would be able to develop their medical skills and train to manage the long term care of sufferers of PPS. I would envisage a team to comprise a Physiotherapist, clinical nurse, and a medical doctor dedicated with the overall management of the team.
These 'teams' to be established within existing hospital infrastructures, located in specific parts of the UK.
The 'teams' would respond to a referral from a local GP who has received information on the symptoms of PPS from us.
The referral system would work as follows:
Within the referral letter sent to our member would be suggested appointment days/times,etc suitable.
The ideal volunteer for this role would be a person with a medical background, although this is not essential. They should have excellent managerial and communication skills, and are able to interrogate databases, google websites, etc. enabling them to establish a database of suitable medical personnel to form the clinical team. This would imply carefully studying the requirements for the long term care of Polio Survivors and to be able to recognize suitable volunteers.
150,000 Polio Survivors are desperately in need of the management of their long term care, and yet within the UK there are very few medical professionals who have a sound knowledge and understanding of Polio, and even less of Post-Polio Syndrome.
When our members approach their GP for support or advice, the vast majority are met with a blank stare, or even worse told that the member is imagining the problems or it is all in their head.
Some members have been told to make an appointment with Physiotherapists who have then given our members incorrect advice resulting in further damage to their motor neurons.
We are working to create a network of specialist clinical teams, strategically placed to meet the requirements of the entire country, and then notify every GP of the project and how we intend to operate the referral system.
Once we have established a section of the network we will begin to roll out the system to other countries, including those 3rd world countries where the situation with the lack of medical, welfare, or social support, is considerably worse than within the UK
This project is ideal for a volunteer to develop their professional skills, whilst providing for a project that will help and support millions of Polio Survivors around the world.